Sometimes you have to believe your own reality, even when no-one else gets it, to make it into something they can see.

My memory was like a trickle of mercury that I was trying to keep hold of, and it kept running away, running everywhere, through my fingers, beyond my reach and out there somewhere, scattered into droplets that I couldn’t pick back up, let alone put together.

I don’t have the luxury of a room piled high with memories that grow dusty with age, all within arm’s reach to drag out among friends so all that I’ve lived through connects me to what I’m doing right now.

There was something happening here, and it was very real, and it was unstoppable. It was that I could see I was not like everyone else around me, and not in a good way, not in a special way, just in a way that didn’t fit. It’s like looking in at life through a shop window, with nothing in your pockets but painkillers, wondering what all those things are in there.

It’s the path that the brain takes that has been disrupted, or disconnected even. The memory rooms aren’t empty, someone just wallpapered over all the doors, so you can’t see how to get at them.

MAUREEN

As you come down from the shock of your changed life you need to constantly remind yourself that change can eventually be changed and this will keep you going through those uneventful daily routines that seem at times to be of little importance.

You are stronger than you ever dreamed you could be. You are in this position because you love. You are the realization of one of the most basic truths in life – we care for our own. You are powerful because you are brave, not the other way around.

Sharing a laugh, sharing news, sharing anything I could glean from the ‘normal’ world outside our troubles was my rule of life throughout those caring years.

For the carer, privy to the life of the patient as it once was, having goals will not only drive you on but will give you the dignity of knowing that against all odds you are still in control.

A smile mustered up against miserable odds that was seemingly beyond your patient a few days previously, a preference revealed that was so unlikely yesterday, a spark of humor, even a show of temper, things that reveal a reawakening interest in their world whether it be frustration or pleasure – it doesn’t matter, it’s still progress to you.